Just diagnosed with BC and a bit confused

9 years 8 months ago #46582 by sara.anne
Replied by sara.anne on topic Just diagnosed with BC and a bit confused
A second TURB? Yes. In many good centers this is the standard of care. The first one gives a pretty good idea of what might be there and where the problem areas are. During the second, the uro has a better idea of areas that were not definitive the first time.

My first TURB resulted in a diagnosis of papillary tumors, with some areas of "undetermined irritation." These were given special attention during the second and were, indeed, CIS. Since the papillary tumors were considered low grade, if the second TURB had not been done the very high grade CIS would have gone undetected and could have caused real trouble.

I don't have the reference in front of me, but there are studies that show that a very large percentage of diagnoses are missed with just one TURB. The second is a VERY GOOD IDEA.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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9 years 8 months ago - 9 years 8 months ago #46577 by Hudsongrl
Replied by Hudsongrl on topic Just diagnosed with BC and a bit confused
Hi Carl! Yes, blue light now sounds right. Our Dr. is Dr. Kozlowski In Chicago...you can google him if you are interested.lol He has video out there someplace talking about his philosophy on treating cancer patients and his years of experience. He is in his early 60's and he is really something...super intelligent and a professor as well. Lots of good care out there, thankfully.

Best Wishes to you too

Hudson

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9 years 8 months ago #46576 by carls
Replied by carls on topic Just diagnosed with BC and a bit confused
Hi Hudsongrl

Sounds like you guys got excellent treatment! What your referring to is a blue light. It apparently does a better job at revealing cancerous sites (that my have been missed or just appeared) than a white light. I think it is also more effective for revealing CIS conditions. I don't believe it penetrates the ureters (usually they are examined via a CT scan with/without dye contrasting)... but I'm no doctor or expert.

Apparently blue light inspection is the norm in Europe for many years but is just being adopted here in the US...From what I read I'm going to insist that it be performed at my 1st 3 month checkup. I did not realize that it needs to be performed under anesthetics... thanks again for the heads up on that one.

best of wishes
Carl

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9 years 8 months ago #46575 by Hudsongrl
Replied by Hudsongrl on topic Just diagnosed with BC and a bit confused
Yep, I try not to second guess too much. I trust our doc and we did get 2 opinions at the onset of the diagnosis. I think CIS is possible anytime, but that is why you get the repeat cystoscopies. At our 3 month check up after the TURBT, hubby's doc did an outpatient procedure where I believe they ran dye into the bladder and up into ureters and looked with a certain type of light to check for anything he missed with the first TURBT. (I think it was dye anyway...could have been some other type of solution but the light thing was for sure) This was done under anesthetic and not an office procedure.

I am no expert, just relaying what our experience has been so far,
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9 years 8 months ago #46574 by carls
Replied by carls on topic Just diagnosed with BC and a bit confused
Hi Hudsongrl

As I find out more it is becoming apparent that each case is treated just a little bit differently. If you read the posting on this site some folks have actually gotten benign tumors from the M-wash.. luckily that did not happen with your husband or friend. It appears that the correct coarse of action is very dependent on the individuals case, which make a lot of sense.

The big question I have now is if I need to get a "second" TURBT to best be sure that no additional cancer is left behind... I am noticing that some folks on this site have had that done and they found out that they had CIS that was initially missed. I'm just not sure how many folks have had a second TURBT just for exploration?... My uro has not discuss anything other than a follow up cysto in 3 month intervals.

I really don't want to second guess the expert, but at the same time I want the absolute best treatment for me... perhaps a second opinion is needed here.

Anyway, thanks for your thoughts and input, best wishes to you and the hubby.
Carl

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9 years 8 months ago #46573 by Hudsongrl
Replied by Hudsongrl on topic Just diagnosed with BC and a bit confused
Hi Carl, I guess the mitomycin was standard protocol at Northwestern Hospital Urology/Oncology...our doc didn't really offer us a choice. He just stated it would be done after the TURBT.

He also told us that if there was a recurrence BCG would be the recommended course after surgery.

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